Hi all I hope someone can give me some advice please? I have had my latest blood test results come in today. I don’t know what they are yet as receptionist refused to email them to me (had this before - depends on which receptionist you get!!?). Anyhoo I’m waiting for a telephone consultation. From this site I now know the difference between being in range and optimal. I’m pessimistic about the discussion. Likely to be that I’m not optimal (given my symptoms) and I had to push the last dose up to 50mg Levo quite strongly when only just back in range. It helped but I’m not great. I don’t want to give the GP ammo to say ‘that’s not thyroid’ with my range of symptoms because it seems they don’t understand. I just need to get my words right so that I can be heard. So, out of these symptoms below, what should I choose and how do I articulate them? Any ideas please?
Pain and difficulty walking
Easily fatigued from any exercise
Foggy brain difficult to concentrate (problem as I teach!)
Very low physical motivation
Pains mainly in shoulders and neck sometimes back
Still not losing this unexpected gift of weight gain!
Generally bleh and not myself
Difficulty with getting off to sleep (could be anxiety about managing life though)
Are all of these symptoms likely to be heard?
Having said all of this I obviously don’t know the TSH level yet (which is all they would measure) and not sure if she agreed to the antibody test. Could be my TSH looks good so will have to see.
Medichecks blood test due to be done next.
Thank you all
Jo
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Please don't agree to any dose change until you have seen your actual results (and what has been tested). Currently you are really only on a "starter" dose of levo - so it's not surprising you feel rough.
I'd say the first 3 symptoms you list are the most important (and most typical of being hypo still).
WiIl you be heard? Possibly. Depends very much on the attitude of your GP. But you might gently mention that it makes the best use of his/her time if they send you the blood results before any consultation and could they please put a note on your record to do this after all future blood tests.
Well obviously just testing TSH is completely inadequate
If TSH is over 2 you definitely need dose increase
If TSH is under 2 you will need to get FULL Thyroid and vitamin testing done
What vitamin supplements are you currently taking
Ask GP to test thyroid antibodies, vitamin D, folate and B12
See ferritin was tested in last post
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12 at least annually
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Which brand of levothyroxine are you currently taking?
Assuming you get dose increase to 75mcg
Many people find Levothyroxine brands are not interchangeable.
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Teva, Aristo and Glenmark are the only lactose free tablets
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Note Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but beware 25mcg Northstar is Teva
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
I went through exactly the same thing recently so I had a prepared list of arguments to use to turn a threatened dose decrease into the increase I felt I needed. I didn’t need most of these as the GP who called me wouldn’t let me get a word in edge ways. He was interested in my symptoms, but obviously had key ones he was looking for - tired and cold. And on those alone he was satisfied I was still hypothyroid and agreed ‘a trial ‘ of increased dose.I was going to use the dose by weight argument - I think it’s 1.6mcg levo for every kilo of weight but double check that. Then there’s the percentage through range of T4 (and T3 if you have the number) which gives room for improvement. But on two occasions it’s been persistence of symptoms, and lack of symptoms of over medication that has won through.
Well all the symptoms you list are of hypothyroidism but in my experience doctors in primary care seem intent on just doing a TSH blood test and maintaining you in the range, irrespective of symptoms, and offer antidepressants as a consolation prize.
In order to be optimally medicated you do need to have a T3 and T4 blood test run and it also is necessary to measure ferritin, folate, B12 and vitamin D as no thyroid hormone replacement works well if these vital vitamins and minerals are not maintained at optimal levels.
If you check out the Thyroid uk website who are the charity who support this amazing forum you will see private companies who will undertake these full thyroid blood tests should your doctor not be able to offer this for you.
If you arrange some full thyroid blood tests simply start a new post on here with the results and ranges and you will be advised of anything that needs further attention,
SlowDragon pennyannie fuchsia-pink Bearo thank you for your replies. It didn’t go well. I had a duty doctor. My TSH is 3.79 (range 0.35 - 4.94). Told me I was exactly mid range so need to be left as I am. I mentioned fatigue, cold especially feet! Walking difficulty and memory issues. She said none of these point to thyroid (huh?). I was too anxious to think straight and forgot to ask if my antibodies had been tested. Will try to speak to my GP on Thursday but fear the worst. Trying to book the Medichecks test ASAP.
Thing is, I AM feeling a lot better by comparison to how I WAS feeling so I keep wondering if I’m expecting to feel more better than I could be? I’m not sure if that makes sense...in other words am I expecting too much?
Hated the phone call. Made me feel like a hypochondriac!!
Thank you for your advice though - it was really helpful to be able to share. X
I'm so sorry - what a waste of time. I feel for you
There's a WORLD of difference between having a TSH of 3.79 and not being on thyroid meds and it being this high while you are on medication. I'm tagging SeasideSusie and SlowDragon in the hope that they can givve you links to show that once on medication, your meds should be increased until TSH goes to less than 2 ... with any luck you can show these to the GP and ask, very nicely, for the extra 25 mcg of levo you so obviously need ...
You are aiming to feel tip-top: it's absolutely possible to get there once on the right level of medication so please don't sell yourself short!
When were vitamin D, folate, ferritin and B12 last tested
TSH over 2 is too high
Speak to your GP.
Ask for vitamins to be tested
If they still won’t increase the dose get FULL thyroid and vitamin testing done via Medichecks
Make sure to get test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
TSH should be under 2 as an absolute maximum when on levothyroxine
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine
Note that it says test should be in morning BEFORE taking levothyroxine
Hey there -You are not a hypochondriac and I totally " get " not knowing how well you can be when having been unwell for so long, and thinking that maybe this is as good as it gets.
Stay strong - when on Levothyroxine for optimal medication the TSH needs to go below 2 :
You have this medical evidence and are not well and need a dose increase.
Thank you both so much for your help. I had some success and owe it to you, thank you! GP has agreed to raise the Levo to 75mg and 50mg alternate days. My antibodies were tested and are raised so Hashimotos confirmed (still need to get a copy of the blood test as she wouldn't give me the value). Took some grit to keep going with the call as she went into a thing about post-menopause fatigue and if you're post-meno don't expect to have any energy left at the end of the day...etc, etc.
Still - she came back to thyroid in the end and even mentioned that I may do better closer to the ranges 1 or 2. Crikey. I think, although she argues every time I speak with her, she's probably not bad considering what I've read from a lot of people's experiences.
Anyway - just wanted to share as I don't know anyone with hypo so they wouldn't understand!
Good you got dose increase, though likely too small
Have you had vitamin D, folate, ferritin and B12 levels tested yet?
If not get tested ASAP
Bloods should be retested 6-8 weeks after EACH DOSE INCREASE
Recommend you get FULL
guidelines on dose levothyroxine by weight
Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function with Hashimoto’s can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
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